Still on a boat that’s never still

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There are things you may not always notice, but have become part of my routine.

I don’t tell you as much anymore, but I’m still rocking.

I don’t cry every day, but I’m still kind of sad.

I’ve stopped talking about it mostly, but it’s still there. The rocking you usually don’t see (but I always feel).

It’s still with me. All day. Every day. The internal swing set is still going. Back and forth, up and down. Always moving. Never still.

My life is still being lived on a boat, and it can feel different from day to day, or even hour to hour. Sometimes there are light waves that I can mostly tune out, and sometimes there are stormy seas that can knock me off my feet.

Eventually I got tired of being “that” person. The one who complained all the time. The one who didn’t seem happy. The person who didn’t seem to be engaged or interested.

So as time went on, I got a little quieter.

My silence doesn’t mean it’s gone. It just means I’m coping and trying to live my life. But it can be really hard sometimes. There are moments of complete despair and frustration. Times when I struggle to prepare a meal, sit at a table, follow the story you’re telling me, or write a sentence that makes sense.

You may wonder why I’m walking slower, and maybe you even ask me. “Just tired,” I might say. I’ve stopped trying to explain how I’m walking on a trampoline. I know it doesn’t make sense and sounds bizarre. So instead, I’m “just tired,” and usually that’s true as well.

There are things you may not always notice, but have become part of my routine. How I request a booth at a restaurant and select places with dim lighting. How I reach for the handrails everywhere I go. How I avoid certain stores and places. How I struggle to clean, cook, run errands and exercise. And how I pass on some outings and activities I would have done before.

When the rocking gets to be too much, sometimes I need to cry. Please don’t tell me I shouldn’t. Let me cry. Let me rant. Let me have a short pity party. Crying helps me cope. It doesn’t mean I can’t deal with it – it just sometimes helps me deal with it.

When you see me holding my head, clutching the table, leaning against a wall, gazing off into the distance, or just being a little quieter, it means I’m struggling. Lend me your arm. Give me a hug. Help me if I ask. Or give me some time to myself.

So no, it hasn’t gone away. I just don’t talk about it as much anymore. There’s nothing new to say about it really.

I try to focus more on other things now, and that’s how it should be. There’s so much I love about my life and this isn’t going to stop me from living it. I’m coping, I’m accepting, and I’m moving forward. I just wanted to let you know that it’s still there.

I’m still on a boat adrift at sea, searching for a shoreline that hasn’t appeared. I’m still on a boat that’s never still.

Sheryl Soffer

 

Posted in Faces of MdDS, Uncategorized | 40 Comments

⏱️ Countdown to Rare Disease Day: 35 Days

In Case You Missed It: The MdDS Awareness Store is open for business. From greeting cards to graphic tees, a wide variety of items is available.  

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NEW THIS MONTH: Rare Disease Day Collection

Purchase a “Handprints” (official logo for Rare Disease Day) or other awareness-raising shirt today and wear it proudly on February 28, 2016. If it’s cold in your part of the world on Rare Disease Day, a hoodie is perfect.*

CUSTOMIZE IT! Everything in the MdDS Awareness Store store can be customized. Be sure to look for style and color options, as well as text options for imprinting your own message. If, however, you want something else, just ask. Our store volunteers continue to add items as their MdDS permits.

Here’s a sampling to get you started.

Rare Disease Day American Apparel Fine T-Shirt

Rare Disease Day, Personalize All, Round Button

Men's MdDS Awareness Nano Hanes T-Shirt

Men’s MdDS Awareness T-Shirt in adult size S-6X!

Be sure to check the top of the screen at www.zazzle.com/mddsfoundation for discount codes. Today ZAZZSENDLOVE will save you 15% sitewide. Different categories go on sale regularly so you should never have to pay full price.

Shop the Store Today: www.zazzle.com/mddsfoundation

*International shipping can take as long as 21 days, so order soon!

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💌 Honor someone that suffers with #whatchamacallit.

Graciously hosted by Razoo Global, last month’s fundraiser page provided an opportunity for our generous supporters – you – to write notes and dedications. There were many, and we wanted to make sure you didn’t miss any of them. We include them here with thanks to others who have given in honor of or in the memory of someone special.

Honor Donations
Charlie & Carol Cox – In honor of Jennifer and Bob McNeil.
James & Linda Fenlason – In honor of Deb Russo.
Kyle & Debbie Gibson – In honor of Terri Gibson.
Nicholas Hoefly – From Nick & Ash of My Honey Crate on behalf of Holly B.
Jeremiah Jackson – For my wife who is battling this crazy disease. Please find a cure!
Marty Josephs, PureWater Dynamics, Inc. – In the name of a wonderful employee of ours, Tawni Wollard, who is presently suffering from DdDs or whatchamacallit.
Mary Kiley – In honor of Marilyn Josselyn.
Rosemary Meyers – This is my way of saying I hope you find a cure. Donating in the name of my Daughter, Michelle Mikolajczyk.
Bob Patten – In honor of Deb Russo.
Lisa Thomas – This is for Lisa’s best gal pal, Terri Gibson. Love you.

In Memory
Daniel Bradley – In memory of my friend Dave Morley. Miss you bud.
Henry Friedman & Linda Levy – In memory of Fred Sidewater.
Erica Rea – In the memory of my friend, Dave Morley, who suffered from MdDS. Cheers.

* * * * * *
A tribute gift is a meaningful way to honor or to remember someone special. Your gift can make a lasting impact on the lives of others, just as your honoree has done for you. If you’d like to make a donation in honor or memory of someone or an occasion, you can donate through Pay Pal and use the comment field to write your dedication. Alternately, use the Memorial or Honor Donation Form (downloadable PDF) and mail to:

MdDS Balance Disorder Foundation
Marilyn Josselyn, President
22406 Shannondell Drive
Audubon, PA 19403

Your dedication will be recognized in our next newsletter and acknowledgement post.

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